Wednesday, July 13, 2011

Trip Planning

Our family is in desperate need of a vacation. S has been on short term disability as he learns to cope with the fact that he can no longer drive and will be in constant pain for the foreseeable future.  The pain and the pain medications both affect his ability to work.  While working with his therapist, he has also been fighting to remain on short term disability and get paid regularly. It has been hell. He has been spending more time fighting to get paid than he has been working on adapting to the situation.

His STD claim has been approved and we can finally plan our trip. This is where my own version of hell comes in. I am still coming to terms with the fact that I am the only driver in our family. I despise driving, but someone has to do it. To get to where we want to go, I will be driving for eight hours. My mother in law has kindly offered to give us the money for a hotel room at the half way point, so the trip will be broken into two portions. One problem solved.

The next problem isn't so easy. S has trouble sitting for more than an hour at a time. Even with frequent rest stops, this trip is going to be tough on him. We are hoping that his new doctor will increase his pain medication for the trip down and back. Otherwise, I don't know that we can make it.

We are also planning on camping. This is one of our true pleasures as a family and not one that we are willing to give up. I am spending an incredible amount of time finding ways to make it easier for S. I've already taught our 11 year old son to help me put up and take down the tent. I have found some chairs that S can stand to sit in. I am going to buy a double thick air mattress and possibly a folding lounge chair so that he can put his feet up. 

I truly believe that getting away from our house will do him (and the rest of us) a world of good.  With good planning, this trip should be a success. Yes, we should probably find a place closer to home, but we are going to one of his favorite vacation spots.  I have no problem doing extra work to make this trip memorable and relaxing for him.

If you have any suggestions, please let me know.

Monday, July 11, 2011

Tolerance, Dependence, and Addiction

Tolerance is a patient's need for an increasing quantity of medication in order to achieve the same effectiveness.

Physical dependence, by contrast, is a known effect of certain types of medication and is characterized by symptoms of withdrawal that differ among medicines...Medically speaking, physical dependence is not considered to be either postive or negative. primary, chronic disease influenced by psychosocial and environmental facters.  It is also strongly genetic.  Addicts are not made from people who do not have the appropriate genetic makeup.  Exposure to pain medications..does not create addicts.  Psuedoaddiction is a syndrome in whcih patients who desperately seek relief from undertreated pain mimic the behavior of those seeking drugs for different reasons, and this merely clouds the picture.  People in genuine chronic pain suffer the more because these distinctions are not generally understood. 

Arthur Rosenfeld: The Truth About Chronic Pain

After reading the first part of Rosenfeld's book, I realized that S's struggles to get proper pain medication are not unique.  What is unique is the fact that he has bipolar disorder.  Bipolar individuals often self medicate with alcohol, narcotics and other illegal drugs.  They are much more susceptible to addiction in the true sense of the word. S was automatically classed with the drug addicts and drug seekers before he even explained what hurt.

After his second surgery, S wanted to get off the narcotics all together.  He was sick of the constipation, the fight with his doctor to get the proper dosages, and, above all, he was sick of being seen as a drug addict.  He was still in excruciating pain, but he was so humiliated by how he was treated that he felt the pain was better than fighting for proper pain management.  His psychiatrist actually asked him "Are you out looking for street drugs, yet?" When S responded with an emphatic "NO!" His doctor came back with "You will be."

His primary care physician told him flat out that he would no longer prescribe any pain medication and to either admit himself into a rehab program or experience withdrawal and all the wonderful things that come with it alone.
The neurosurgeon--who started him on the medications in the first place and later put him back on them--referred him to a pain management clinic.

The doctor at the pain management clinic told him that because of his bipolar disorder and the extent of the surgeries, S could not take the normal route of steroids and nerve oblation. The only option open to him was narcotics, but they could not prescribe narcotics because he was bipolar. "Go back to your family physician."

He tried to withdrawal at home. It was horrible. I had just had a baby less than a month before. We had been warned that because of the high dosage of medications he had been taking, he could end up with seizures and possibly die.  I just couldn't deal with that and a newborn, so he admitted himself into a rehab eight hours away from where we lived. It was the only one with an open bed.

He was not addicted to the medication. He was dependent on it. Just like I am dependent on my medication. If I am not properly stepped down from my medication, I go through severe withdrawal symptoms--dizziness, disorientation and possible suicidal thoughts. My doctor will step me down when it is time. The difference between me and S? My medication is a non-tricyclic antidepressant and his are narcotics.

The ironic part of this story? Within a month of returning from the rehab program, it was discovered that the second fusion had failed which explained the horrible pain he was experiencing and the need for additional pain management. His neurosurgeon prescribed an even higher dose of pain medication than he had been taking to get him through until the third surgery could be performed.  And, to add to the fun, we were told the third surgery was only to ensure that his spine was properly supported. The chances of actual pain relief were slim to none. We were looking at starting the medication game all over again.

Wednesday, July 6, 2011

The Medication Game

Part One of Arthur Rosenfeld's book The Truth About Chronic Pain: Patients And Professionals On How To Face It, Understand It, Overcome It covers the stories of people who live in chronic pain.  Most of these stories mirrored, in part, S and my situation.  For example, Mary Vargas' husband sees her pain as the third partner in their marriage.  Allyson Gabrey comments "I don't want to spend the rest of my life lying on the couch, why should I?"

Both S and I have had those types of thoughts many times.  Whenever I plan a trip or function, I have to think about how the trip will affect S's pain levels.  Is it a "change the patch" day?  Can we schedule the trip during medication peak?  How will the pain be when we get there?

The same is true for day to day activities.  S is not working, and I work from home, which makes things easier in some respects.  We also send the kids to daycare so that he gets a period of "downtime" during the day.  But, because of his pain levels, he cannot plan to do anything during the hours the kids are at school. He needs to keep himself as pain free as he can so he is not already in the hole when they get home.  This could change if he could increase his pain medication, but the doctor will only prescribe a certain dosage.

This seems to be a common fight for people in pain.  Dr. Gerald Young says it best (in Rosenfeld's book) when he says "Very few doctors look to titrate up to where the patient says, "Hey, this is great! I feel good!"  If the patient says they feel good, it's time to titrate down!"

I understand that doctors are afraid of addiction and the DEA, but why in this day and age should a person live in constant pain.  They are only given enough medication to "take the edge off?" but not to be pain free.  Yes, chronic pain sufferers become dependent on their medications, but so do individuals with chronic depression, diabetes, and heart disease.  The pain sufferers are not addicted, they are dependent.  There is a distinct difference which I will discuss in tomorrow's post.

Monday, July 4, 2011

The Drug Stigma

According to the Institute of Medicine (IOM), approximately 116 million people in the United States suffers from chronic pain.  The report acknowledges that,  "For many people, however, pain prevention, assessment, and treatment are inadequate." This is a subject S and I are intimately familiar with.

Because of the stimga attached to narcotics, it is virtually impossible for some people to get access to the pain relief that they desperately need.  S uses a narcotic pain patch and oral narcotics for breakthrough pain.  Due to medication interactions and his bipolar disorder, narcotics are the only effective pain medication he can take without a risk of extreme mania.

However, whenever he sees a new doctor or takes a trip to the emergency, he is almost seen as a drug seeker.  Even if he is there for something other than the pain and never once asks for his medication.

Case in point, I recently had to take S to the emergency room.  He was "falling asleep" without warning, no matter what he was doing.  It came on suddenly and scared both of us rather badly.  We called his insurance company's nurse line and the nurse suggested that it might be extremely low blood pressure.  We tried most of the day to raise his blood pressure, but the episodes continued.  It was a Friday afternoon and there was no way we were going to be able to see his regular doctor and I was frightened that his blood pressure would drop low enough to due permanent damage or kill him.

To their credit, the ER doctors actually did do every test that they could to rule out a stroke, heart or lung problems or an infection.  But, I could hear the doctors and nurses talking and they automatically assumed drug addiction.  As test after test came back negative, there was more and more talk of addiction and rehab at the nurses station.

After 4 hours, I asked that he be given his regular medication dose because I had left in a hurry and forgot to bring a dose from home.  My request was outright denied.  He was even denied his psychiatric drugs, even though it was well past his time to take them.  He was forced to lie there in excruciating pain for another four hours.

Once, while S was passed out, the doctor came to suggest taking him off all of his medication, including his psychiatric drugs.  I just kind of looked at him like he was insane and said "no, thank you.  He is on these medications for a reason."

After 8 hours,  S was released with the helpful answer of "reduce the levels of your pain medication."  By that time I wanted to punch the doctor in the face, but I managed to smile, nod and get S dressed and out the door without any yelling or violence.  I was pretty darn proud of myself!

Fast forward a couple of days to S's regularly scheduled therapy session.  He told his psychologist what was going on, and she knew exactly what happened.  The stress from fighting with his disability insurance company combined with his barely managed pain levels were causing him to experience blackouts.  He wasn't falling asleep.  His blood pressure was not low.  His body was just shutting down.

Had the doctor taken him off his medications, he would have probably experienced them more frequently.  Not to mention the fact that his bipolar disorder would be completely unmanaged and he would not be able to walk or function on his own due to extreme pain. 

I have been reading The Truth About Chronic Pain: Patients And Professionals On How To Face It, Understand It, Overcome It by Arthur Rosenfeld which discusses in detail, the stigma of narcotics and the problems people have with getting adequate pain relief.  Over the next couple of days, I will share my thoughts and feelings about this book.  I recommend it to anyone living with a chronic pain condition.